Once you’ve been diagnosed with a significant health issue, whether it’s cancer, heart disease, a metabolic disorder like diabetes, or something else, there’s a tendency to assume that any new sensation is due to a condition. Any new ache, pain, patch of dry skin — anything at all — brings up fears that it might be a significant health issue coming back.
For patients with cancer, this can be especially hard, as there are so many things that could be symptoms of medication ceasing to work or a relapse from remission, and yet, are equally as likely to be totally unrelated; chances are good that they are completely unrelated.
Even within a specific type of cancer, people with the same stage and grade may experience symptoms in ways different enough that the commonalities are hard to find. Likewise, the symptoms of many cancers are so general that they could apply to a wide variety of issues, which can make them hard to track down.
I have a form of blood cancer called follicular lymphoma, which is considered treatable, but chronic and incurable; I’m currently NED (No Evidence of Disease), and it’s been three years since I finished treatment and reached that designation. However, there’s no way to be sure there’s not some mutant blood cell hanging out in my system, just waiting for my immune system to miss some attempt by that little mutant cell to multiply.
Given that, like many blood cancers, I had no symptoms until I had reached stage 4 — meaning the cancer was in multiple locations, above and below my diaphragm, and in at least two body systems. In my case, this meant the cancer was in my bone marrow and had likely been growing for five or more years — a lack of symptoms isn’t particularly reassuring.
Also, my primary symptoms were fatigue, weight loss and sweats, symptoms that can relate to a wide variety of possible issues, especially as a middle-aged woman in the throes of perimenopause, which has similar symptoms.
Of course, like any middle-aged person, I have my share of new and unexpected aches, pains and bodily changes: I have arthritis in my knees, bone spurs in my right foot, my skin dries out more easily than it used to, I can hurt myself sneezing and so on, just like many people my age.
But sometimes I get something new and unexpected: I eat something that causes digestive upset, or I injure myself and don’t notice until I have an inexplicable sore in a place I can’t remember injuring. Even when a mole changes color, size, shape or texture (increased risk of melanoma is a side effect of many cancer treatments), my heart rate changes unexpectedly and inexplicably or when a patch of skin itches repeatedly for no apparent reason — just about anything new and different can lead to concerns about relapse.
When this happens, I try to watch it for a day or two and see if it goes away. It usually does, but when it doesn’t, a quick email to my doctor typically gets me a reassuring answer.
I don’t like assuming that anything and everything could be related to a relapse; I don’t think anyone does, and yet, I don’t know how to stop. I’ve talked to people with the same cancer who were diagnosed 15 or more years ago, and their cancer has never progressed and has never been treated. I’ve talked to people who went through six or more lines (types) of treatments and still aren’t NED. But mostly, I’ve talked to people who have the same cancer, who went through the same treatment, who were in remission for 10, 15, even 20 or more years, and then relapsed.
From talking with other cancer patients and survivors, I’m not alone in this fear, and I’m not sure if that thought gives me comfort or makes me feel worse. My friends think I’m paranoid, or even obsessed, and they might be right. But at the same time, I know that there’s a real risk of relapse; 1% to 2% a year may sound minimal, and objectively, it is. Subjectively, it’s always there. Just because I’m paranoid, doesn’t mean someone — or something — isn’t actually out to get me.
I don’t like it, but it’s still there — a permanent part of my reality.
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